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My 17 year old son has Progressive Myoclonic Epilepsy...
Wed, 02/09/2005 - 01:21HI MY NAME IS ANN AND I AM NEW TO THIS SITE. I AM LOOKING FOR ANYONE WHO HAS A CHILD WITH PROGRESSIVE MYOCLONIC EPILEPSY OR ANYONE THAT KNOWS OF A GOOD SITE WHERE I CAN GET INFORMATION ABOUT THIS DISEASE. MY 17 YEAR OLD SON ZACH WAS DIAGNOSED IN 2000 AND HIS CONDTION IS DETERIORATING RAPIDLY. THROUGHOUT THE YEARS I HAVE FOUND VARIOUS SITES BUT MOST OF THEM ARE OUTDATED. I AM LOOKING FOR SOMETHING THAT IS MORE CURRENT AS WELL AS INFORMATION THAT WOULD BE RELATIVELY EASY FOR MY OTHER CHILDREN TO READ AND UNDERSTAND. I WOULD REALLY APPRECIATE ANY HELP THAT YOU CAN GIVE ME.
RE: My 17 year old son has Progressive Myoclonic Epilepsy...
Submitted by ktamos on Sun, 2005-01-16 - 20:39
Hi Ann, I have a 16 yr. old daughter who has Juvenile Myoclonic Epilepsy. I am not sure how Progressive Myoclonic Epilepsy is diagnosed or if the two are related. I do know that it was very difficult finding detailed information on JME. Most of the general Epilepsy books don't give you much detailed information on specific types of epilepsy. I did however, find a very specific book on Juvenile Myoclonic Epilepsy by searching the internet. The book is very in depth- more of a medical text for doctors- but i have managed to sort through most of it and have learned more. ( I first found the book on the web, then went to a Barnes and Nobles Book store and had them order it for me) It might be worth a try. You might also try to contact a local chapter of the epilepsy foundation. The office near my home has been most helpful. Good luck to you and your son.